Make-A-Wish Breakfast

I had the pleasure of speaking at a Make-A-Wish breakfast sharing how the wish we received impacted our family. Who knew nine years after my son was born, I’d be speaking before 90 people.

Though I am planning to share, in greater detail, about our wish experience in my book, A Miracle In My Living Room, I thought you would appreciate reading my speech as a preview. Enjoy…

My name is Evelyn Mann. My son received his wish in 2008.

To understand the impact of this wish on our family, I’d like to share a bit of my son’s story.

When I was pregnant, my husband & I were told my son could have 4 different potential diagnoses. With the exception of one, they were all “not compatible with life.” 

The news was dire, but we pressed on.

My son Samuel, who’s name means God has heard, was born on August 2nd, 2005 at 5 pounds, 12 ounces and very much alive. However, he needed a tube to help him breathe.  In his second week of life, we received his diagnosis; Thanatophoric Dysplasia Dwarfism. 

Thanatophoric in Greek means “death bringing”.  Surviving birth is a miracle. Samuel is the only survivor in Florida and only 1 of 6 survivors worldwide I’m aware of.  The primary challenge for these children is not their dwarfism but their restricted lung capacity.

Within weeks, my son had a tracheostomy placed in his throat and a feeding tube placed in his stomach. Not knowing how long Samuel would live, we were encouraged to celebrate every moment of our son’s young life.

After six months at St. Joseph’s Hospital, Samuel came home to 24 hour nursing care. He was taken to doctor’s offices by ambulance.  My husband & I never left the nurses alone so we could be there in a case of emergency.

When Samuel was about 2 years old, my husband suggested we take our son to the park. The look on my face must have given him my answer.  Questions whirled in my mind. What if he gets too hot?  If some emergency happens, what will we do then? So I kept saying no.  

When Samuel turned 3 years old, he was nominated to receive a wish. Maria Jameson, a Make-A-Wish volunteer and Joe Pearl, the father of a wish child, came to our home to assess what wish would be granted.  They asked many questions about Samuel’s interests. I shared Samuel enjoys balloons and the huge fish mural painted on the wall in his bedroom.

A few weeks later, Maria & Joe came to our church fellowship hall to announce Samuel’s wish. They brought lots of balloons and an envelope revealing we were going to SeaWorld.

Before we knew it, the time came for us to go on our seven day adventure. On a cold day in January, a limo pulled in front of our home to transport us to Orlando.  Such a big limo for a little guy with dwarfism!  We filled half of the huge limo with our luggage & Samuel’s medical equipment which included his ventilator, suction equipment, oxygen tanks, ambu bag and back up batteries.

We were driven to Give Kids The World Village in Orlando, a resort for wish families staffed by loving volunteers. We were given our own villa as well as tickets to not only SeaWorld but to all the other theme parks as well. What a surprise.

Each day, my husband & I would venture out with Samuel several times. At home, it was overwhelming to go out once a week to visit Samuel’s doctors and now we were leaving three times a day. We learned very quickly, we needed a check list to be sure we didn’t leave any of Samuel’s life-saving equipment in the villa.

We visited SeaWorld, Disney World, the Rainforest Café and many other attractions but a couple of moments stand out.

While at Disney, I needed to change Samuel. My husband waited outside while I walked down a long walkway to find the ladies room.  Once there, I laid Samuel down and then reached under the stroller for a diaper. I search everywhere and didn’t find a diaper. I look at the mom next to me changing her daughter. In my desperation, I ask her for a diaper. She graciously offered me one.  Later, I laugh. We have all of Samuel’s medical equipment but forgot the one thing you should never leave the home without…a diaper!

Another time, we were deep in Disney World as I was pushing Samuel’s stroller near a water pond. I stopped, listening to the hum of Samuel’s ventilator and looked out over the water.  A thought of panic overtook me. Are we crazy doing this? What if something happens? How is an ambulance going to find to us here? I turned to look at Samuel and found him sleeping.  Everything was fine.

It was during this wish, I discovered that being pushed out of my comfort zone was not only good for me but for Samuel as well who was discovering a whole new world he never knew existed. He saw dolphins close up, had pictures taken with Mickey Mouse & Goofy, and enjoyed his first merry-go-round ride.

Yes, it was a vacation but it was more than that for us. It was a training ground, teaching us how to live a more normal life with a medically needy child.

A few weeks after we came home, my husband again asked me, “Can we take him to the park now?” My first impulse was to say “no” but then I remembered our trip to Disney. “Yes, we can go.”

And go we did. To the park, to Lowry Park Zoo and the Florida Marine Aquarium.

My son is now 9 years old. He is still a little guy at 18 pounds, 25 inches but he has a big personality with a smile that melts hearts. We just returned from vacation driving 4,300 miles taking Samuel to Niagara Falls and Washington, D.C. among other places. The genesis for this trip began five years ago when we received an amazing wish.

I’m looking forward to sharing these experiences in a book I’m writing called,  A Miracle In My Living Room. Plans are to complete the book by next year.

I’d like to thank Make-A-Wish for impacting our family in such a dramatic way. It really made a world of difference. Thank you for listening to our story.

 

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This entry was posted on August 27, 2014. 1 Comment

Reality Check

Back Camera

The soothing aroma of cinnamon rises from my glass tea cup as I look outside. It’s mid-morning on a sunny Florida day. A few wispy clouds linger on the bright blue horizon as a soft breeze touches the tree limbs in a sweet caress.  The coffee shop offers a cold taupe granite countertop which holds my laptop.

As I string words together for my memoir, I enjoy soft piano music playing in my ear. Over the soft melody, I hear a baby babbling in a stroller behind me. I smile. I attempt to focus on the computer screen. The baby continues to coo. Then I realize, Samuel makes these same sounds.

I turn around see two ladies sitting at the table with a stroller to the side. A woman with blonde hair holds the baby in her arms.

“How old is your baby?”

The other woman answers, “She’s eighteen months.”

“She making sounds like my son.”

“Oh, how old is your son?”

I hesitate to answer. In the many times I have been asked this question, I face the same dilemma. My son doesn’t look like his age. In this case, how do I explain an eight year old who is still in the cooing stage. Sometimes, I’m tempted to say he is 8. Perhaps they’ll think he’s 8 months, not 8 years old.

“My son is eight years old. He has a rare form of dwarfism called Thanatophoric Dysplasia.”

The woman holding the baby chimes in. “Oh, how interesting.”

I smile. “He’s eighteen pounds and twenty-four inches long.”

The mother looks at her daughter. “That’s how much Brianna weighs.”

I look at her daughter who’s legs and arms are much longer than Samuel. Mental note: my son is smaller than an eighteen month old. I don’t dwell on Samuel’s size in comparison to other children but it’s in moments like these I can’t escape the fact.

We chat for a few more moments and then say our goodbye’s. The café is quiet now with only a few people left enjoying a solitary cup of brew. I pack my laptop, sling my purse strap over my shoulder and walk to my car. It’s not until later when I reflect on the encounter noting my journey is a unique one. Though different, I understand my son is just another version of normal. What my husband calls “God’s Alternate Construction.”

 

Quick Note

I just wanted to post a quick note. Last week we celebrated my son, Samuel’s 8th birthday. Though he was given the diagnosis of Thanatophoric Dysplasia Dwarfism which is considered a lethal diagnosis by the medical books, he defied the text books. What a gift God has given us. For those of you who have found this blog and are facing a negative pregnancy diagnosis, I would be happy to share our journey with you. Please feel free to contact me at evelyn@gotmustardseed.com.

The Writing Journey

I hope you have been enjoying my past posts. This blog is a part of a seed which was planted in me as a child. I worked on the high school newspaper and wrote travel articles in my teens. I knew then I wanted to write a book but felt I did not have any life history to share even though I spent eighteen years living on a sailboat. As a young adult, I spent my 20’s discovering my place in the world. My 30’s were spent discovering my relationship with God. I married in my late 30’s.

By my 40th birthday, I was pregnant and on bed rest in the hospital. My son was born on August 2nd, 2005. This was the day a miracle was born. Samuel was really critical in the beginning and we were told to count his days in terms of months, not years. Next week, our son will turn seven years old. Miracles do happen!

This past January, I started to write “A Miracle in My Living Room”. I now feel I have a story to tell. Along with writing my memoir, I started this blog. I also have the privilege to guest post on Mary DeMuth’s website (See post of July 27, 2012). To read my post: http://www.marydemuth.com/2012/07/be-real-awesome-guest-post-by-evelynn-mann/
I am excited to see what God has for me on this journey. My hope is to bring you along with me.

Feel free to share your writing journey.

Samuel’s Diagnosis

In the process of posting on Samuel’s website and creating our hopeseed blog, I realized that I have not clearly stated what Samuel’s diagnosis is or what challenges he encounters because of this diagnosis. Let me briefly take you back to my 22nd week of pregnancy.
We had a high level sonogram completed to find out if our son indeed had a problem. The doctor and geneticist were very apologetic that they had to give us news that any parent does not want to hear. They suspected Samuel could have one of three diagnoses and all of them were not compatible with life. After we left, a strange thing happened. As we were leaving the doctor’s office, Ralph & I looked at each other and we both felt a complete sense of peace come over us. As we went home that evening, we clung to the gift of peace and took each day as it came.
We never had an amniocentesis completed. We were not completely sure of the diagnosis until a couple of weeks after Samuel was born. Then it was confirmed, Samuel had Thanatophoric Dwarfism Dysplasia.
We were told early on not to do any research on the internet about his diagnosis. Wanting to know all I could, I promptly ignored this advice and conducted my search. It did not take me long to realize why we were told not to look on the internet. The news was grim…the prognosis was not hopeful. There were no clear cases of survival. At the hospital we were told of two cases in Japan but nothing that I could confirm on the internet.
Yet, Samuel kept living. He was in the NICU for six weeks where he received a tracheostomy and a gastrointestinal tube. Then he was transferred to the PICU. To our delight and extreme joy, we brought Samuel home when he was six months old. He is now six years old and one of the highlights of our life.
Thanatophoric Dwarfism Dysplasia is a rare form of dwarfism. Thanatophoric is a Greek word meaning “death bringing”. Once his diagnosis was confirmed with genetic testing, it was difficult to find optimism in Samuel’s prognosis. However, the patient kept living. I could post the technical definition of Samuel’s diagnosis but I prefer to use layman’s terms. It is how I would explain the diagnosis to you if you were sitting right next to me enjoying a cup of tea. Samuel’s ribs are hard and fixed. When we breathe, our ribs move in and out as we inhale and exhale. Samuel’s ribs don’t move because they are hard and fixed in place. His lungs move downward into his stomach area. This is why we have always been cautious of overfeeding Samuel so as to not interfere with his breathing.
We did receive one piece of good news. Samuel has a bump on his head which is covered by his hair. This bump is caused by fluid on the brain; otherwise known as Hydrocephalus. We found out; however, that he does not have a progressive type where the water keeps building and needs to be relieved. Just to note that progressive Hydrocephalus can be managed and treated. Many children have this challenge and live productive lives. For us, it was a blessing that it was one less challenge we had to face.
Samuel also has dwarfism. At one doctor’s appointment the nurses were trying to find how to plot Samuel on the growth chart. After some discussion, they agreed that he was off the chart, literally! Though he is six years old, he wearing clothes made for an 18 month old child.
He also has dysplasia in his legs. One leg is a little “bowed” out from the other leg. Samuel is not walking at this point so we won’t address this issue until he gets older. We are blessed to have a Shriner’s hospital not far from where we live to address these concerns as they come up.
Samuel also needs a ventilator to breathe. He was on a highly intensive machine in the hospital called an oscillator ventilator. He was on morphine in order to tolerate the up to 200 breaths per minute being pumped into his body. One nurse even told me that he would never get off this machine, but he did. Then he was placed on an amazing machine called the Servo-i. One respiratory therapist told us the machine could ventilate a frog. Samuel didn’t have to do any work to breathe, the machine did it for him. The drawback was that we could not take this extremely sophisticated technology to our house. After months of trials, Samuel was able to tolerate a home ventilator which he still uses today.
We have to be very careful that Samuel does not get sick due to this lung deficiency. We have a “wash hands rule” in our home that has served us well. He does not go to school but he has amazing teachers from the Hospital Homebound program in our county that is working to help him develop. One day, I am hoping there will be technology that will help Samuel communicate with us. Right now, he does a fine job of letting us know what he does want and doesn’t want.
Overall, Samuel is a most contented child. We are so blessed by his sunny disposition and joyful spirit. Though he has hoses and a machine attached to him, what family and friends see is just Samuel. The hoses seem to vanish into the background and all you see is a brilliant smile that takes your breath away. In many ways he is like other children. He loves balloons, will watch Elmo all day if you let him and he adores being the center of attention.
What I cherish is how our sweet spirited child inspires others. I received a post on Samuel’s website that I would like to quote here to impress this point:
Hi, I’m a current DMS (Ultrasound) Student. My assignment was Thanatophoric Dwarfism. The teacher was reading the 3rd trimester anomalies as I highlighted them I was saying to myself, don’t want to know about it, not interested, don’t care, depressing. Been avoiding to research because is consider a fatal anomalies. But when I come across Samuel Mann, my attitude change, it got me interested. Survival, God’s blessing. It changed my life. My presentation will be on Samuel Amazing life Story. God Bless you Angel Samuel. Madea Cielo
My hope and desire is that Samuel continues to inspire. He is an example that miracles really do happen. There is indeed, a miracle in my living room.

Seeds of Hope

One of my ambitions in publishing this blog is to offer hope. Hope comes in many forms and in many ways. One of the most powerful testimonies of hope is reading a personal life story. My story of hope comes in a very small package. His name is Samuel and he has a rare and often lethal form of dwarfism called Thanatophoric Dysplaysia Dwarfism. There is another story I would like to share with you. It is the story of a dear lady I met at a recent writer’s conference. She is bubbly, bright eyed and very engaging. I didn’t know about her testimony until today. I would have never guessed she has faced so many trials in her young life. It was so moving and full of hope that I wanted to share it. If you have a story of hope, I would love to hear about it. Never underestimate the power of an encouraging word or story!
http://goodnewsfl.org/content/view/from_anguish_to_activism

 

A Miracle in My Living Room

A Miracle in Our Living Room

A miracle is defined in the Miriam-Webster dictionary as being an “extraordinary event manifesting divine intervention in human affairs”.  This definition resonates with me as I look on the last half decade of my life.

It was not a miracle that I met my husband, though I prayed for a wonderful man to come into my life. Our meeting was brought together by a website called Christian Café.com. My husband proposed to me two and a half years to the day from our first meeting. Six weeks later we were married in our church before friends and family. It was a glorious day.

Six months later we were delighted by the news that we were expecting. We bought little booties and gave them to both sets of parents as a way of announcing our bundle of joy. We lived in expectation of the birth of our first child.

The day of our first sonogram had arrived. We were excited to learn if the baby was a “he” or a “she”.  We received wonderful news revealing our child to be a “he”. However, the doctor also shared an area of concern. Our son’s arms and legs were substantially shorter than that of a pregnant woman in her 20th week of gestation.  I wanted to rejoice in the news of our child’s gender but instead I was grappling with this concerning news. At first, I thought, the doctor is wrong. Our child would “catch up” and grow to be within normal range.

We sought another opinion and to our surprise the news was dire.  We were told our son’s diagnosis was potentially “not compatible with life”. Further testing was recommended to include an amniocentesis.  Despite facing such a negative prognosis, we both felt a “peace that passes all understanding”.  That peace carried us through to the day of our son’s birth in August of 2005.

We did not hear a loud cry from our son as he made his entrance into the world. He was whisked away to the Neo-Natal Intensive Care Unit where he was intubated and placed on a highly specialized ventilator. We were told he would not survive birth. The first miracle; he lived.  Indeed, the patient kept living. In those first six weeks of his young life, our son, Samuel, had a tracheostomy and a gastrointestinal tube placed. We were told to count our son’s days in terms of months, not years. Each month of life was celebrated like a birthday. He was transferred to the Pediatric Intensive Care Unit where he celebrated his first Christmas surrounded by family, friends, doctors and nurses.  He was a miracle at four and a half months old.

As the New Year approached we were encouraged by Samuel’s lungs getting stronger. Through a series of ventilator trials he was slowly being weaned off the hospital grade ventilator to a ventilator made for home use. It was an arduous process. Two steps forward, one step back. Then it happened, he was breathing on the home ventilator.  By February, he was being transported by an ambulance to our home and 24 hour nursing care. August arrived and we celebrated the day we were told not to expect, Samuel’s first birthday.  We asked guests to bring balloons to this momentous event.  And so they did.  The house was full of bright and beautiful balloons of all shapes and colors. The house was also full of hope.

Today our son is eight years old. He is full of exuberance and joy with a hint of mischief. We believe God divinely intervened in our son’s life. Just in the last year, we were amazed to have Samuel weaned off the ventilator.

I’m blessed to have a real life miracle in my living room.